It feels like the nightmare you have been having has come true. Your doctor has just told you that your leukemia or lymphoma has come back. So what now?
Recurrence is when cancer comes back after a period of remission. In the case of chronic cancers, such as chronic myelogenous leukemia, recurrence may be expected as part of the cycle of the disease. In other cases, recurrence may be unexpected, especially if the remission has lasted a significant amount of time.
Recurrence of cancer occurs when initial treatment of the disease did not kill all of the cancer cells. The chemotherapy or radiation therapy that you received was able to kill enough cancer cells so that the disease could not be detected. However, if a few cells were left behind and survived, they can multiply and grow over time, leading to a relapse.
The fact that your cancer has come back does not necessarily mean that you didn’t get the right therapy the first time around. It may have just as much to do with the characteristics of the cancer itself. As we learn more about what causes lymphoma and leukemia to occur in the first place, we will certainly learn more about what makes it come back.
What are the Chances that Cancer Will Come Back?
This is a question that is very difficult to answer. The risk that your cancer will recur depends on the type of cancer that you have, the genetics of the disease, and the type of therapy you had. Even with all the statistical data, doctors can’t really be sure that your cancer is completely gone, never to be seen again.
Can Cancer Recurrence be Prevented?
When people learn that their cancer has recurred, they often wonder or worry that something that they did, or did not do, caused it to happen. They may even blame themselves for the relapse. Rest assured: There was nothing you could do to prevent this from happening.
Even if you follow all of your doctor's orders to the letter, and maintain healthy lifestyle choices, cancer can still return.
Treatment of Recurrence
The treatment options that are available to treat a recurrence of lymphoma or leukemia depend a good deal on how you want it to be treated. You may want to get started right away and treat the recurrence aggressively. Or you might not be willing to pursue treatment again. These are very personal choices.
If continuing therapy is what you choose, you are likely to receive treatment that is a little different than what you have had in the past. Different combinations of medications or new clinical trial therapies might be options.
Opting not to receive further treatment might be a hard decision to make -- both for yourself and for the people who love you. However, choosing not to treat the cancer does not mean that you will no longer receive care, just that the goals and focus of the care will be different. Palliative care focuses on relief of symptoms and maintaining quality of life.
There are a number of factors to consider when deciding whether or not to continue with active treatment of your cancer. You have gone through this before, so you know much more about what treatment entails this time around. That may be either an advantage or disadvantage!
Keep in mind that our knowledge of blood and marrow cancers and their treatment is constantly evolving and growing. New therapies and methods for controlling side effects and complications may have been developed since you were treated the first time around.
Questions to Ask Your Healthcare Team
Learning that your cancer has returned can be both devastating and surprising. When hearing that kind of news, emotions make it hard to hear any more news after it! It can be helpful to create a list of questions to ask your healthcare team about your cancer recurrence, so that you can refer to them at your next appointment. Things you might consider asking include:
- What are my treatment options?
- What can I expect from that treatment option in terms of side effects and quality of life?
- Will I need to be admitted to the hospital for this treatment?
- How long will this treatment continue?
- How does this treatment compare to what I have received in the past?
- Is this treatment option likely to be successful in my case?
- What if it doesn’t work for me?
- What is your treatment recommendation?
- Are clinical trials an option for me?
- What happens if I choose not to be actively treated?
Remember that no matter what your doctor recommends, it is just that -- a recommendation. The ultimate decision about what kind of treatment you choose to, or not to, receive is up to you. If you would like a different perspective on your specific situation, you may choose to request a second opinion.
Summing it Up
A recurrence of cancer can bring back all the feelings you had when you were first diagnosed with leukemia or lymphoma. You may feel like your healthcare team, your body, and even your spirit has turned on you. You might feel like things are out of your control -- after all, you did everything right and it still came back!
The truth is, while it is not possible to control whether or not cancer comes back, it is within your control to decide how you will manage it.
At this time, it is important that you are aware of all your options and weigh the risks and benefits of each. Keep lines of communication open with your healthcare team, as well as your family, so that each person understands your goals and wishes for your future.
Kelvin, J., Tyson, L. (2005) Questions and Answers About Cancer Symptoms and Treatment Side Effects. Jones and Bartlett: Sudbury, MA.
Stern, T., Sekeres, M. (2004) Facing Cancer. McGraw-Hill: New York.